Tuesday, July 13, 2010

Getting Ready for School

So, I found out that one of the reasons mom organized her desk is because she is working on making a packet for my kindergarten teacher and the school nurse.

Mom is a little nervous about me going to kindergarten. IT doesn't seem to matter that I was in preschool at the same school since I was three. She says the difference is that it was only 3 or 4 half days a week, instead of 5 full days.

The things mom has to do for me are a little different than for my brothers and sisters. I have one sister with asthma, but that is pretty straight forward. She has a doctor's release for her inhaler at school and that is about it. One of my brother's has some sensory stuff like me, but it's mild and that's a simple "Hey, he needs to not be over stimulated or he gets very anxious and hyper."

For me, there is so much going on under the surface. I suppose it's like a creek or river, it looks calm and still put under the surface is a strong current.

The obvious with me is my heart. Having the bicuspid aortic valve with stenosis, I need to be watched for fatigue and cyanosis. So for recess and physical education I need to be allowed to rest. Then I have officially ketotic hypoglycemia. My blood sugar drops when I am sick and when I get hot. I usually only have problems during the heat of summer or if I get sick. We have a glucose meter to watch it, plus I can only have natural sugars. No HFCS, no splenda, no aspartame, no saccharin. The endocrinologist really emphasized that, said the others are obvious, but HFCS (high fructose corn syrup) is really bad. It is not recognized by the body as a sugar, plus the body craves it so you would eat more of it than you would something with sugar in it.

I have food intolerances too. I can't tolerate dairy products at all. It's gotten to the point to where I have really bad tummy aches and throw up. While that is a bad intolerance, it's not the one that worries mom. I have a VERY bad reaction to things with red 40 dye in them. I get EXTREMELY hyper until I pass out. (last time it happened it went for about 11 hours) Then when I wake up I feel like I have a "hangover" (dark circles under the eyes, headache, tired, sensitive more than usual). These worry mom because most people don't understand that not eating this foods isn't an option. It's a have to avoid.

Then the rest of the stuff is the mild hypotonia, the sensory integration disorder, etc.

Anyhow... mom is looking to gather everything together to make her little packet and also get doctor letter's to verify. Please pray for her. She gets emotional sometimes when dealing with all of my stuff. She wants things perfect but knows it's not possible. :)

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